But You Don't Look Sick

Here is one of the 4 essays I mentioned in my last post. I did the rewrite tonight.

But You Don’t Look Sick
M. Hull © May 19, 2010

Chronic Pain (CP) patients hear a lot of things from other people. These statements run the gamut from slightly annoying to downright hurtful to dismissive to humiliating to derogatory and everything in between. There are two such statements that seem to be pet peeves for most CP patients. They are “Anyone who takes pain medication regularly is really a drug addict” (there are many variations on this theme) and “But you don’t look sick/in pain” is the second one. Is there an official face, costume, clothing or body language for people who are sick or in pain? No there is not, yet people insist on judging our condition and pain levels by the way we look. Just because you can’t see it does not mean it is not there. Though there are not any universal appearances for CP patients, there are signals people can see if they’d bother to actually look for them. CP patients often try to hide their pain for self-protection, but there are clues.

“The eyes are the windows to the soul” is a saying we have all heard. In a CP patient, the eyes are often a window to seeing how bad the pain is at any time. Sadness, frustration, anger, weariness, wariness, and other emotions can be recognized in the eyes. If it is someone you have known for some time, reading their eyes will be a bit easier for you. But for those who don’t know, some cp patients will widen their eyes when they get a sudden sharp pain or a sharp increase in pain level. The pupils will dilate in some people. Also a cp patient will often close their eyes for a couple moments as they mentally prepare to deal with an increase in their pain (often accompanied by slower deliberate breathing). Many of us have signs of being tired such as bags or shadows under our eyes all the time. Those bags or shadows can appear larger or darker during tough times or flares. This is caused by a lack of restful sleep due to pain. Sometimes our eyes will be red and or swollen from crying because the pain was just too much and caused us to cry (pain crisis). Some try to cover these signs with makeup, causing the amount of makeup itself to become a sign of how they are feeling. For example, if a friend suffers from CP, but doesn’t usually wear a lot of makeup, shows up with concealer or foundation under their eyes, it is most likely to cover up the physical results of pain induced insomnia or crying and thus a clue to their pain level. Our medications or unshed tears can often make our eyes appear glassy or dull, which also serves as a clue.

A CP patient's breathing can also be a very obvious signal of their pain level. Many of us try different breathing techniques to try and control our pain. Long slow breaths in through the nose then blown out through the mouth are just one technique. Many CP patients will automatically start doing these breathing exercises when their pain reaches a certain level, or we are hit with a sudden unexpected burst of pain or increase in pain level. Another is when the patient starts paying attention to their breathing and deliberately takes deep breaths, releasing them slowly (sometimes with eyes closed).

A person’s face shows multitudes of emotions with both obvious and subtle changes. A big happy smile is an obvious indicator that a person is happy or in a good mood. For CP patients our faces also give clues to how much we hurt. In response to pain some will press their lips together (the tighter the pressing, the higher the pain), draw their eyebrows together causing wrinkles to appear between them, close their eyes and focus on breathing, frown, or other signs. For some the more pronounced those wrinkles are, the more they hurt. Some will clench their jaw tightly and possibly grind their teeth, again how tightly they clench or intensely they grind their teeth serves as a signal of how much they hurt.

How a CP pt moves also belies their pain levels. The higher our pain levels, the more carefully we move. Depending on what injury or disease causes the pain you can notice limping, taking stairs one at a time (with both feet on same step, like a toddler), using the non-dominant hand, trembling, twitching or jerking of the affected limb or torso. The person may start flexing their fingers or stretching/shaking an arm or leg to relieve pressure, numbness, or pins & needles sensations that come with nerve damage. People with back issues will often try hard to not slouch or bend over, sitting or carrying themselves as straight as possible and doing their best to not bend their backs at all. People with knee injuries will sometimes walk without bending their knees, lean against a wall rather than sit down or other things that will keep them from bending the painful joint. A CP patient may start holding or rubbing a painful spot, sometimes without being aware of it. A CP patient who is in a high level of pain will find a comfortable (or as comfortable as possible) place to sit and stay there; only getting up if they absolutely must. Many, when sitting, will shift positions frequently trying to ease some of the pain. How a CP pt greets you or says good-bye will change depending on their level of pain. Someone who usually hugs you in greetings or farewell, won’t hug the same way, if at all, when their pain is real high. They may not stand up for an introduction or to say hello when you arrive. Movement often increases pain so when their pain levels are high, the CP patient moves around less often. There are many other clues through body language if one bothers to look for them, they can be found.

The tones in a CP patient’s voice often change with their pain level. Some may talk louder, others talk softer. Their voice may become more tense or hesitant. Some may even snap at you without realizing it. They often get an undertone when they speak that can reveal their pain level or anxiety.

Even the clothing a CP patient wears can give clues to their pain level. CP patients tend to wear clothing that will be the least restrictive, apply the least pressure to their body, and have the least impact upon their pain levels. Most often they are items that are easy to put on and to get off and do not apply pressure to the parts of our bodies that hurt. We often wear low heeled or flat comfortable shoes that will properly support our feet. When at home we may stay in our pajamas because they are usually the most non-restrictive and comfortable clothing we own.

Most of us try our hardest to hide our pain levels from others, but our bodies give us away. If you have a friend or relative who suffers from CP you can learn to interpret their signals and thus realize how much they are hurting. The signs I mention within this essay are only a few and meant to give a general idea of things to look for, thus disproving the “you don’t look sick” statement. Each person is different, so each person’s signals will be different. I tried to include fairly common signs. If you pay attention and take the time to learn the tel- tale signs of the pain your loved one is feeling, you will be in a better position to help or support this person. It means a lot to a cp patient to have someone say something like “your pain is really bad right now, what can I do to help?”. By taking the time to learn the signals you are showing your friend or family member how much you care.

CP patients may not look as badly as we feel sometimes, but to dismiss us with such a statement as “But you don’t look sick” is unnecessarily cruel; especially since the signs that show how much we hurt are actually there. Just because our conditions are not as obvious as a cast, wound, crutches or wheelchair, does not mean that our pain is not there. Diabetes, cancer, Alzheimers, chronic pain and more are all conditions which do not always have obvious appearance related symptoms, but that in no way changes the fact that the person is suffering.

We have all heard “Don’t judge a book by its cover” at some point in our lives. It certainly applies to CP patients; do not assume that just because we do not overtly show our pain that we are not hurting. Having a friend or loved one dismiss our pain hurts more than the pain ever could. Sadly many people who respond with the “you don’t look sick” statement either have not paid attention to the signs, or just don’t care enough to see it. I find it sad that any person can so easily dismiss the suffering of another human being this way.